// M O M C O N F E S SI O N V O L 1 //

It's Monday and I'm ready to turn a new leaf.  I was not at my best the last couple of days and I'm anxious to make up for it.

If you have been following here you know that last week was a big one for us.  My child undergoing surgery, followed by four days in the very close quarters of our hospital room.  Then coming home and having a baby who, while possessing the super-fast-healing-powers of an infant, was still not his usual jolly self, and trying to discern if his fussiness was due to pain, or tiredness, or teething (yeah, that's going on too).  And trying to decide it if merits Tylenol, or the prescription pain meds we were given. Then trying to give him said medicine which he hates and very quickly learned to store up in his little chubby cheeks and then just when I think it's gone down spews it out all over his face and clothes, and then rubs his hands in it, then rubs his hands all over his head and anything else within reach, then we are all sticky and smell like fake strawberries.  And I don't know if was his medicine or something else but he has been staying up so late at night, 11:00, 11:30, midnight.  And I just want to go to sleep.

After all this build up I hit a low point Saturday night.  I was so tired.  Alex was studying, and I was trying to keep Johnny quiet and out of his way so that he could actually get something done. And Johnny was FUH-ssyyyy. He didn't want to nurse.  He didn't want to be put down. He screamed when I tried to give him his medicine then screamed some more when I wiped off his face because his spit all the medicine out.  I was stomping my feet and slamming doors and being sarcastic and complaining to Alex that Johnny was being "really annoying." And that's not fair.  Firstly, it does no good to be sarcastic and passive aggressive towards a baby because he's only a baby and it means nothing to him.  Secondly, he's not trying to be annoying, he's just trying to tell me he needs something, goodness knows what, but something.  And he had literally just had his butt split open 5 days earlier. So it really was not fair of me. The culmination was Alex taking Johnny down stairs and telling me to go to bed.

The next day I felt better after finally getting a good night's rest.  And it probably would have been a good morning if it wasn't for Shutterfly.  Yes, it's all their fault. You see, there was a sale, half off photo books, and I've been wanting to print out some of the thousands of pictures we've been taking of Johnny.   But the sale ended Sunday so I had to get it done.  Then I figured while I was placing an order I should get our Christmas cards figured out. And while I'm at it I should order some larger prints from our family portrait session that I'd like to frame and hang up or give as gifts. But I had to get it all done that day so I wouldn't have to pay multiple shipping fees. And I had to do it quickly because Alex needs the computer to do his homework.  So I would do it while Johnny was napping, but he only napped for 30 minutes. Then the internet was slow, and the computer kept freezing up, and I forgot to save my changes, and what was supposed to be a quick project took 5 hours during which the baby was fussy because he just wanted me to hold him and my husband got no studying done.  And when it was finally finished I felt gross from staying in my pajamas so long and drinking too much coffee and being mad at Shutterfly and the computer and everyone in my house. If you get a Christmas card from us this year you'd better appreciate it and hang it up on your refrigerator because much time, toil, and tears went into it.

I want to be a patient wife and mother and I don't like getting exasperated with my baby. I'm sure I'm not the only mama to do so, am I?  How do you have more patience, and more compassion, and love? Anyway, the evening was redeemed by a really good steak dinner and getting all caught up on Parks and Recreation. Johnny slept really well last night, and so did Alex and I.  And today is rainy and cloudy and a good day for sitting inside and holding my baby and making sure he gets all the love and cuddles he needs to feel all better. Today I will be better.

******

Here some of our family photos that went into the accursed Shutterfly oder. Enjoy!

Yes Please. And Thank You

 I have learned a lot about accepting help from other people since Johnny has been born.  First there was the adjustment of having a baby.  Then having a baby with major medical issues. So many people reached out to us during those first weeks offering support in the form of prayers, food, company, and help around our house.  I didn't cook one meal until Johnny was two months old.   Little by little I have adjusted to having a little one around, but I'm not nearly the multi-tasker I used to be. The first meal I made after Johnny was born (a salad)  felt like a major accomplishment. And our bathroom only gets cleaned about once a month now. (And now you're not going to want to come over any more.)

Then there's being a home-owner and all the work that goes along with that.  Let's just say that with a little one who wakes up (almost) every time I put him down and a husband who works full time while going back to school there are a lot of things around here that get left un-done. Our neighbor mowed our lawn all summer, and is currently cleaning out our garden for the winter and making compost for us.  Taking care of our house is something I love to do and pride myself in. Not being able to keep up with all the things I'd like to do was very humbling.  I told Alex that we could have a beautiful yard, or a baby, but not both.....we've got a baby!

Then I broke my foot last month.   I am so grateful, because that could have been way worse than it was. I was only on crutches for five days before being able to put weight on my foot again. But for those five days life came to a stand still.  Having a baby and a broken foot meant sitting on the floor all day with diapers, water and the laptop within reach while my friends and family did my grocery shopping, cooking and cleaning for me.

Round two in the hospital brought on another wave of offers for meals and help with errands and other things. You'd think that by now I would have no problem saying "yes please!" But my initial reaction is still one of independence. I'll be fine. I don't need help. I'll figure something out.  Accepting help from other people is humbling, it's admitting deficiencies and lack of control.  And who wants to seem like they don't have things under control?  But if I am honest with myself I quickly come to the conclusion that I do need help. I am human. I can't do life by myself and I'm not supposed to.  I'm glad I don't need people to cook and clean for me all the time. But for the times that life has overwhelmed us, I'm glad we have great friends who have offered themselves up.  And  I am blessed with a marriage and friendships that fulfill the needs of everyday life; love, rest, intimacy, community, support.

So, if you are one of the many people who have brought us meals, visited us in the hospital, washed my dishes, cleaned my toilets, done my laundry, made trips to the grocery store, left treats on our porch, brought me a latte, and kept me company, THANK YOU!!! You have made life sweet when it otherwise would have been very bitter, and Alex and I have mentioned you in our prayers many times over.

*********

We are home from the hospital! Johnny's catheter came out this morning and as soon as he was producing wet diapers we were free to go! The game plan from here on out is thus: for the next three weeks we will leave Johnny's bottom alone to heal.  Then we will have an appointment with his surgeon to learn how to dilate his rectum with special rods.  We will be dilating it for 3-4 weeks, gradually increasing the size of the rods, and when our surgeon deems the dilation to be going well we can schedule the third and final surgery. Two down, one to go.

Here are some pics from our last two days in the hospital.

Johnny was reunited with his dear Mr. Ducky who usually hangs from his car seat.

Tuesday evening Johnny was super grumpy but wouldn't go to sleep.  When Alex got to the hospital after work he sat with Johnny on his lap and he fell asleep within 5 minutes.  Sometimes I think Johnny needs both of us around before he will go to bed.

s

A visit from Grandma and Grandpa Shepperd

Johnny got a new toy from the ostomy nurse

He's a stoma buddy and we call him Stoma Stan

Johnny likes Stoma Stan.

Hopefully now that Johnny can pull Stoma Stan's bag he will stop pulling his own

We were able to use a stroller to go cruising around the hospital floor.

Yoga Pants and Food Network

We are halfway through our first full day in the hospital, Alex is at work, Johnny is much more alert and happy, and I am completely bored.  Johnny's surgeon was just in and said the best kind of hospital stay is a boring one, so I guess that's good.

Johnny has resumed all his normal eating and pooping activity. In fact, at 5:30 this morning we had the most epic ostomy bag leak to date.  Poop all over Johnny and poop soaked through every layer of bedding on his crib. That was the second time I had been up for over an hour with Johnny that night. Needless to say we didn't get a lot of sleep.

I am realizing that attachment parenting, which I am all for, does not work very well in a hospital setting.  We are a co-sleeping family. It took about two nights after bringing Johnny home from the NICU to realize that we would all be happier and get more sleep if Johnny was in bed with us.  I am aware of his sleeping patterns better than he is and often have him nursed and settled back into a deep sleep before he ever cries or opens his eyes.  Alex is also able to sleep through  it all.  It does have it's down sides; our queen size bed is a little cramped with three, somehow Johnny manages to take up a lot of space. I usually have a stiff neck or shoulders from sleeping in only one position, on my side, facing Johnny. But I love having him in bed with us, hearing him breathe and getting to snuggle him. I never realized how much I love co-sleeping until just a few nights ago when Johnny was doing some major teething and wouldn't stay asleep in our bed.  The only way we could get him down for the night was in a little cradle that we use for naps, so we let him sleep in there.  I thought it would be a relief  having a little more space in the bed but ended up just crying myself to sleep. *Hormones*

Anyway, co-sleeping is not something they let you do in hospitals, especially when your baby has IV's and a catheter running from him. So needless to say Johnny did not sleep well last night.  I think part of it was that he was uncomfortable, but also that he's not used to sleeping by himself. So I spent half the night leaning over his crib trying to fool him into thinking that I was sleeping with him.

Johnny is doing well! He is no longer receiving IV fluids or antibiotics, and if he continues to eat well they will take the line out all together. Then he will just have the catheter, which, as I mentioned before, has to stay in for three days so his urethra can recover from being operated on.  It's kind of annoying that there is only one little thing keeping us here, but I'm thankful that there were no complications with surgery and that Johnny is back to his squirmy, hungry, happy self.

On the up side, we have cable here in the hospital.  And there's no pressure to get ready in the mornings, so I am enjoying me some Food Network whilst lounging in my yoga pants.  Now, if only someone would bring me a latte....

someone's having fun playing with toys!

Reading stories with Auntie Amy

Welcome to the Other Side of the River

"Welcome to the other side of the river!" That's what Johnny's nurse told us when we got to his room here at Children's in Minneapolis.  That statement was preceded by us telling her that we had only been at Children's in St. Paul before.

Johnny's surgery went well and he is currently sleeping off his anesthetic. And we are making ourselves at home in his room, where we will be for the rest of this week. But I should back up to this morning.

Our morning began when my alarm went off at 6:30.  We didn't need to leave for the hospital until 10:30, but 6:30 was the last time I would be able to nurse Johnny before his surgery.  I woke him up and he did a good long nursing and even though I was tired I was contently enjoying and savoring this time to nurse him, knowing that it would be many hours before I would get to do it again. The prospect of not being able to feed Johnny was not a pleasant one. We've had to do that before and it's easiest if Johnny can just sleep through it. Thankfully he went back to sleep after nursing and slept until 8:30.

We spent the morning getting ready and packing up. For not being able to eat Johnny was a very good little boy. He sat serenely with Alex while we had breakfast, like he knew something was going on. I was doing fine until I sat down to pump.  It's not what I'm used to doing and it's not what I wanted to be doing. Around this time Johnny started to get fussy and it broke my heart not being able to give what he wanted and needed. 

We arrived at the hospital at 11:00 and got checked in in the surgery center, then were shown to a pre-op room. Johnny had a little mini check-up, during which he was very chatty and smiley with his nurse, and then got put into his little baby scrubs. And then we just waited until his OR was ready.  We spoke with his surgeon and the anesthesiologist and then it was time to go. I imagined that they would put him on the hospital bed and wheel him off, but the nurse just held out her arms to carry him. It was hard to hand Johnny over, we kissed him, then kissed him again.  Then they walked off down the hall and the last thing I saw was Johnny smiling at the nurse. That little baby is just so full of joy. I love him. 

There were many things that felt like the first time Johnny went into surgery, but while being familiar, everything was also different.  We were sad to see him go, and shed a few tears, but it wasn't the heart wrenching agony of seeing him go the first time.  I was pumping throughout the day, but it wasn't like pumping in the NICU when I had never nursed Johnny.  I knew this was just temporary, and that later that day I would get to nurse him again. When surgery was done Johnny was sleepy, but stirring and opening his eyes, not like last time when it took him almost 20 hours to come out of the anesthesia.  We got up to our room and it looked a lot like our NICU room, only way bigger.  Same fold out couch, but a TV and a private bathroom!

When we were in the St. Paul, NICU we were just down the hill from the Cathedral.  We could look out our window and see the dome and steeple and it was such a comfort to know that Christ was there watching over us.  When we got to our 6th floor room here in Minneapolis I looked our window, it faces east and off in the distance we can see the St. Paul skyline, and there's the Cathedral, much father away, but we can still see it. 

Johnny has been awake on and off.  He seems to be in a little bit of pain, but they haven't needed to give him anything stronger than Advil so far. He's nursing again with no problem, and it is so great to be nursing him. In this procedure they created a rectal opening, closed off the fistula between in colon and urethra and connected his colon to the rectal opening. His recovery should be quick, but we will be in the hospital until at least Thursday because he needs a catheter until the urethra has healed from surgery. So call me if you want to come visit!!

Post-op and sleeping soundly.  Thanks for praying everyone!

Four Years

Four years ago was the day my life began.

And since then we have filled all our days with love and grace and friendship.

We have laughed and we have had silence.

We've dreamed together and grieved together.

We have been stretched and have grown because of trials.

And we know our marriage is worth any sacrifice.

The boundaries of my heart expand with each day.

Follow Up

I realize that I need to tie up some loose ends from Johnny's birth story and bring you up to speed with where we're at now.

Since our stay in the NICU we have had several follow-ups, and we have had follow-ups from those follow-ups.  And we will have a few more follow-ups before Johnny turns 1.  And I imagine there will be more follow-ups after that.  It feels like we will be following up on things for the rest of our lives, and I wish we could just be done and settled.  But I am thankful that so far all these follow-ups have given good results.

Kidney ultrasound.

Of all the defects associated with VACTERL Syndrome the three they were checking out Johnny for were his heart, kidneys, and spine.  He had an ECHO done in the NICU that came back normal. And that was such a relief.  A kidney ultrasound showed that he has a "horseshoe kidney", which means his kidneys are connected along the bottom.  Kidney function appeared to be normal, but they would follow up with another ultrasound when he's a little older. The x-ray that showed some abnormalities in his spine was inconclusive.  The thing they were worried about was a tethered spine, which means that instead of hanging free in the body the spine is attached to something, which if untreated could lead to paralysis, but if caught early could be corrected with surgery. They would follow up on that with an MRI when Johnny was 3 months old.

Then finally, Johnny failed the infant hearing test, and a more advanced test showed he has a mild to moderate hearing loss. Hearing loss is associated with VACTERL Syndrome, so it was not a total surprise. He can hear, but if he doesn't get hearing aids he would be missing quite a bit and could develop some speech impediments. So we would also be following up with an audiologist to get him fitted for hearing aids.  It was sad to think that Johnny will have to wear hearing aids for the rest of his life.  It's just another thing to make him different from all the other kids. But after everything else we were dealing with hearing aids seemed like small potatoes.

Johnny tries his hearing aids for the first time.  He seems to notice the difference!

The second kindney ultrasound was good, no blockage visible, but they wanted to follow up with another ultrasound in 3 months.

The MRI also went well and no tethered spine was detected.  However he does have some curvature in his spine, and they noticed some abnormal curvature in the aorta of his heart. So we would be following up with an orthopedic surgeon and a cardiologist.

Getting ready for the MRI

The "orthopod" (as some call them), said that Johnny just is too small right now to be able to tell if the curvature in his spine will need any intervention.  So we will be following up at 6 months and 1 year of age.

The cardiologist had a lot of information for us, and I am very bad explaining it, but what it comes down to is Johnny heart is working fine and will not need surgery. There are a couple of mis-formed arteries, but they work.  And of course, he wants to follow up with another ECHO in a few month.

Waiting at the Cardiologist's office

And so we just keep adding things to our calender and keep thanking the Lord that nothing they have seen so far has been serious.  After getting the green light from all these specialists we were finally able to schedule Johnny's next surgery! And it's soon! October 28.  What a strange phone call that was, "Hi, I'd like to schedule a surgery for my son John."  Not something most parents have to do.  We are a little nervous, and sad that our baby boy has to go through this. But we are so happy to think that we might be done with surgery by the new year!

At the doctor with Grandpa!

Harvest

August, September and even some of October it's tomatoes.  All day, every day, tomatoes.  Go out to the garden and pick a bucket of tomatoes.  Have tomatoes with every meal.  Chop them up and put them in the freezer for later. It's one of my favorite times of the year. 

I have an old fashioned little part of me that yearns to be a farmer.  To work with my hands, till the earth, and eat the fruit of my labor.  There's this desire for simpler times, fewer concerns, a smaller world.  My city-loving-self would never actually allow me to pack up and move to the country, so I satisfy my homesteading dreams with a little 10x20 garden plot in our backyard.  There I can kneel down and get my hands dirty, labor and sweat, and harvest a return

It's amazing just how much we can get out of that little plot. Especially considering I did about 12 hours of gardening this summer. 

Red and Yellow Jelly Beans

Roman Candles

Some sort of pepper.  Sorry pepper, I forgot your name.

Heirloom Beef Steak

Indigo Rose

Green Zebra

Summer Squash

How we eat our tomatoes: in salads, bruschetta, BLT's, caprese, salsa, and of course, tomato sauce. My very favorite tomato sauce recipe is this one from one of my favorite food blogs, 101 cookbooks. It's easy, it's fast, it dirties few dishes, and it's delicious.  I've used the same recipe with red tomatoes and the results were equally agreeable.

Salsa makings

Freezing Prep

Our first summer in this house Alex and I planted a raspberry bush.  Just one.  And that first year we didn't get a single raspberry.  The next summer we got a handful, but not much. We had heard that raspberries are supposed to spread like weeds. So we waited expectantly for a bumper crop.  This was our fourth summer here, and the raspberry bush has finally begun to spread.   More shoots came up this spring bearing little white blossoms that would turn unto fruit.  I think it will be several more years before I will be making pies or batches of jam.  But this year for about 2 weeks straight I could go out each morning and pick just enough raspberries to have on my yogurt. 

Some fruit comes right away, you plant and harvest in the same season.  It's easy, which is not a bad thing.  And then some fruit requires patience.  You plant and tend and toil, and bare seasons go by before any fruit is seen. But when it does come that fruit is so sweet.

I think you know what I'm talking about.

Birth Story Pt. 4: The Longest Week

Our brave little guy before surgery

//

After 4 hours of restless sleep I was on my way back to the NICU.  Spending the night away from my baby and husband had been agony and I was anxious to be with them again, but I walked very slowly through the hospital, my left knee was very weak and I didn't want to fall again.

I got to our room shortly before the doctors and surgeons did morning rounds.  We were hoping to hear that Johnny would go into surgery that day.  But because his condition, while serious, was not life threatening they were going to wait until the next day to operate.  This was frustrating to hear.  We didn't want our baby to be in pain any longer than he needed to be, and we also wanted to get surgery behind us as quickly as possible so that we could get home and be a family.

We did at least get a more complete prognosis for Johnny.  He would have this first surgery to create a colostomy so that he can pass stool.  That meant Alex and I would have to learn how to care for an ostomy.  Then at around 6 months of age Johnny will have a second surgery to create an anus and hook his colon up to it.  He will still use the ostomy for up to 3 months after that to let the new anus heal up.  Then there will be a third surgery to close off the ostomy as well as the fistula between his colon and urethra.  The surgeon told us  that Johnny will never have perfect bowel control and it's something we will have to help regulate with diet, medications and possibly a few other operations as he gets older.  It was very daunting to think about not only learning how to care for an infant but also dealing with a major medical appliance on a daily basis.  It was a complete unknown and at the time seemed like an insurmountable feat.

We also learned an inperferate anus is a birth defect that is commonly associated with other birth defects, together they make up a syndrome called VACTERL Syndrome. Vertebral,  Anus, Cardiol, Tracheal, Esophageal, Renal and Limb disorders that can often occur at the same time.  They wanted to check Johnny for all the other possible defects.  It was obvious that he didn't have any deformities in his limbs, and the trachea and esophagus were both functioning normally.  They saw on his initial x-rays that there were some anomalies at the base of his spine, so that would need looking into.  They also ordered a cardiogram of his heart, and a kidney ultrasound to be done after surgery.

After the doctors left  our room I looked at my phone.  I had a text from my mom, "have you pumped yet?"  At the time I was so distraught and distracted that I didn't care if my milk came in or not.  But I am so grateful to my mother for pushing me and reminding me to pump, because it would be  4 more days before I could even attempt to breastfeed Johnny and despite the delay and separation I did not have a problem with my supply. That day I started a rigid schedule of pumping every two to three hours. There was a freezer in the NICU for breast milk where we stored it until Johnny could use it.  (He was getting his nutrients through IV fluids until his intestine had an outlet.)

We decided we wanted to have Johnny baptized before going into surgery.  Even though it was a relatively low risk surgery we wanted him washed with that grace and welcomed as a member of God's family. Our priest was free that morning and so were Johnny's godparents.  So they all came down to the hospital along with my parents.  The NICU only allows four visitors in a room at a time, including parents, but they made an exception for us on this occasion.  We would have loved for Johnny to have been baptized at our church, but our little NICU baptism was really quite beautiful.  It was like a healing balm on our wearied souls.  A welcomed moment of calm in the middle of uncertainty and anxiety.  Along with the baptism our priest administered the Anointing of the Sick, and a blessing for new mothers and babies. Afterwards we felt refreshed and that we could better face what was coming next.

before you judge my appearance, remember what I have just been through. 

Johnny with parents and godparents, Ian and Jacqui.

After the baptism Johnny's godparents stayed to visit for a while.  It felt like it had been ages since we had done something as normal as hanging out with friends, and it felt great! Then, shortly after Ian and Jacqui left, we got a call.  Jacqui (who was 36 weeks pregnant) had just felt her water break! We were in the middle of our big adventure and now they were just beginning their own.  Later that night we got word that they had had their own little boy! We love to reminisce about how the last thing they did before having their baby was come to our babies baptism.  

We spent the rest of Saturday holding our baby, or at least holding his hand through the window of the incubator, pumping (just me) and trying to remember to get meals.  It doesn't sound like a lot of activity but by the end of the day we were exhausted.  It was then that I noticed my left leg was quite swollen.  Postpartum women are at risk for blood clots, and having an epidural puts you at higher risk.  We asked Johnny's nurse to take a look and she thought my left leg felt warmer than the right.  So we decided we'd better go to the ER.  At least it was just down a floor and few hallways over from where we were! Johnny's nurse also called for a wheelchair for me. She said she sees it all the time, mama's who have just delivered are so worried about the babies in the NICU that they forget to take care of themselves. 

So there we were, Saturday at around 11:00pm, in the ER.  I thankfully did not have a blood clot.  But my blood pressure was elevated.  The doctor I saw thought it was probably just stress related (ya think?) But that I should follow up with my GP in a couple days. Thankful that I was ok, Alex wheeled me back to the NICU. It was now 1:00 am, so I decided to stay at the hospital instead of going to my parents.  Alex and I got cozy on a fold-out couch that was about the size of a twin bed, and had yet another fitful night of sleep.

The next morning we waited anxiously for Johnny's operating time.  When it was time for him to go we kissed his little hands good-bye and they wheeled away his incubator.  I sat down on our "bed" and cried. After a few minutes Alex suggested that we do the liturgy of the hours.  This was the reading from morning prayer that day. 

Praise be to the God and Father of our Lord Jesus Christ, 

the Father of compassion and the God of all comfort,

 who comforts us in all our troubles, 

so that we can comfort those in any trouble

 with the comfort we ourselves receive from God.

 For just as we share abundantly in the sufferings of Christ,

 so also our comfort abounds through Christ. 

2 Co 1:3-5 

It never ceases to amaze me how our Lord will find a way to tell us what we need to hear.  After we had our miscarriage someone from our church told me that God would use that experience to minister others. Within a year two close friends lost babies of their own.  Being able to sow seeds of comfort made my own suffering so much more redemptive.  I do believe that the Lord will use us again at some point to minister to others who are experiencing the same difficulties we went through with Johnny.

Surgery lasted only about 45 minutes! Then he was back in his room with us. He had a big purple blob on the side of his tummy (which, by the way, already looked much less distended) which was actually his intestine.  It was still too swollen to be fitted with the ostomy bag, so it was just covered with some gauze. Surgery had gone very well, he was still on a breathing machine, and they would wait until he started breathing on his own to take him off of it.  But as soon as that happened and he was fitted with his bag then we could work on feeding him! 

It took Johnny about 24 hours to come off his breathing machine, which is much longer than we expected. And even after he was breathing on his own it took a long time for the effects of the anesthetic to wear off, so he was very sleepy.  The number one goal now was to get him eating on his own so that we could go home.  I always thought breastfeeding would be easy, it looks like the most natural thing in the world.  But it is hard, and frustrating, and takes a long time to prefect. There I was holding Johnny, the lactation nurse was trying to coax his mouth open, one nurse was holding a pillow under Johnny, another nurse was shoving my breast into his mouth, it was really just comical how many people it took to breastfeed him.  And Johnny would just fall asleep.  Alex had a little more success giving him pumped milk in a bottle. He would strip him down to his diaper to try to keep him awake.  He took a little, but it was a struggle.  I had wanted to breast feed my baby so badly, but it seemed like it was never going to happen.  I was resigned to Johnny being bottled fed if it only meant that we could go home. 

On Wednesday, almost a week after he was born, the IV line that had been in his head blew out.  So his nurse put one in his left hand.  A few hours later that IV blew out.  So then she tried the right hand, and that one lasted only a matter of minutes.  Our nurse really didn't want to put another one back in his head so she suggested we try without one for the night and see if he would pick up on his feedings. If not then they would feed him through an NG tube.  I think having him off IV fluids finally allowed him to develop more of an appetite because that's when we turned a corner with breastfeeding. All of a sudden he just got it! He was latching, sucking and swallowing! That night I cried again, this time tears of relief that something had finally gone right.  Being able to breastfeed Johnny is such a blessing.  After all our turmoil and separation I count it as a precious gift from the Lord. 

Little by little he was taking more from the breast and less from the bottle.  Friday morning they took out his NG tube and he was eating all on his own, and he was gaining weight.  The nurses were beginning to wonder why we were still there. So were we! Then finally on Saturday June 8, after being in hospitals for 12 days straight, we got our discharge and were going home.  After packing up our things Alex had to make four trips out to the car.  It was amazing how much stuff we had accumulated while we were there! As we were leaving many of the nurses we had met throughout the week were there waiving us off.  

We were going home--

with

our baby! With

our

baby  I couldn't believe it, and I couldn't stop smiling. That first week of June had been so cold and rainy but Saturday June 8 was beautiful and sunny.  Everything was so green and alive and flowers were blooming.  It was a perfect day. We stopped by our church on the way home and took Johnny in to offer up our thanks to the Lord, for our baby and for seeing us through that long, long week.  I said before that the most triumphant moment of my life was when Johnny was first born and I first held him to my chest, and it still is.  But a very close second was when we carried him up our front steps and brought him into our home.

shhhh! Nap time!

Post-op. Still on the ventilator. The blob above his diaper is his intestine. 

New ostomy bag. And less wires!

Johnny does not like the NG tube.

No more wires, just cozy baby!

Nap time with Papa,

Kisses from Papa.

Finally going home.